I had hoped by now we would have an answer, THE answer, to share with all of you. However today, Lee received a phone call from the Endoscopy office in Pittsburgh asking for us to contact Cleveland. Seems like Cleveland didn't send the video results from the barium swallow. Why it was not send this in the first place, I don't know. Why Pittsburgh can't call themselves to get it, I don't know.
Lee's attitude about it, he wants them to take their time and make the right decision. Of course I agree with this... DUH...but I am sooooo over all this waiting. All year we've waited for news. Good news and bad news. From work and from the doctors. Anything and everything. Ugh. All this waiting has made me a little crazy. I mean, crazier.
I'm surprised I haven't resorted to wearing sweats in public. Or developed a bad case of touretts? Well, actually I do cuss alot.
Another week of the unknown. Another week of hoping.
If you see me walking down the street wearing a prom gown pushing a shopping cart full of cats, keep driving as I'm too far gone.
Thursday, August 11, 2011
Saturday, August 6, 2011
I Pop Heart Pittsburgh
The week ended with heart cath. very early Friday morning. Our only appt. but what a long one. From start to finish it was about 5 1/2 hours.
After Lee was...um...man shaven and given a Valium, he kept trying to show me what was under his gown. See, the doctor use an artery in the upper leg to gain access to the heart. Thus the reason he had to be shaved. Also explained his goofiness. Those drugs had kicked in.
Since waiting for the procedure to be finished was getting boring, I mean there's only so many times you can visit the gift shop and cafeteria, I walked down to the Natural History museum by way of the Batman shoot. Only thing going on there were gangs of nerds rubbernecking it to catch a glimpse of turned out, nothing.
The Natural Museum's collection of gems and minerals was simply the best display I've even seen. Yes, I like rocks. Pretty shimmering ones. Ones with crazy bold colors and lots of sparkle. This place did not disappoint.
While eating hummus at a Middle Eastern restaurant, I got the call to come get Lee. So off I
went, again by way of the Batman shoot. This time the extras were being called on set. Something was getting ready to happen. Just my luck.
The doctor gave Lee's heart a clean bill of health. No problems. Another thumbs up.
Afterwards, and with the approval of the hospital, Lee felt well enough to check out the National Aviary. Wheelchair bound of course. No walking too far, no driving for 24 hrs and no heavy lifting for Lee.
The National Aviary is smaller than I thought it would be but very nice. Got very close to a penguin named Elvis. Could have touched him.
Luckily, the aviary is close to the Warhol Museum. So we went over there to check it out. On
Friday's after 5pm, it's half price.
In what Lee called the nicest wheelchair in town, we made our way through every floor.
Probably the most fabulous thing we saw, I mean experienced, was the silver balloon room.
( see Facebook for a photo )
I was beginning to lose steam so we checked out the Warhol cafe for a coffee and an Andy shaped cookie. Plus my feet were on fire! All the walking I'd done was catching up with me.
After spending a great deal of time and a good deal of money in the Warhol gift shop, we made our way to the Hofbrauhaus. A gigantic Bavarian restaurant and brewery. Should have been called Hofbraumansion. We dined on pretzels and potato cakes. And talked about what's next.
The transplant committee will meet at some point this coming week to discuss Lee's case. After a decision has been made, he'll get "the call." And that's when I'll let you all know.
After Lee was...um...man shaven and given a Valium, he kept trying to show me what was under his gown. See, the doctor use an artery in the upper leg to gain access to the heart. Thus the reason he had to be shaved. Also explained his goofiness. Those drugs had kicked in.
Since waiting for the procedure to be finished was getting boring, I mean there's only so many times you can visit the gift shop and cafeteria, I walked down to the Natural History museum by way of the Batman shoot. Only thing going on there were gangs of nerds rubbernecking it to catch a glimpse of turned out, nothing.
The Natural Museum's collection of gems and minerals was simply the best display I've even seen. Yes, I like rocks. Pretty shimmering ones. Ones with crazy bold colors and lots of sparkle. This place did not disappoint.
While eating hummus at a Middle Eastern restaurant, I got the call to come get Lee. So off I
went, again by way of the Batman shoot. This time the extras were being called on set. Something was getting ready to happen. Just my luck.
The doctor gave Lee's heart a clean bill of health. No problems. Another thumbs up.
Afterwards, and with the approval of the hospital, Lee felt well enough to check out the National Aviary. Wheelchair bound of course. No walking too far, no driving for 24 hrs and no heavy lifting for Lee.
The National Aviary is smaller than I thought it would be but very nice. Got very close to a penguin named Elvis. Could have touched him.
Luckily, the aviary is close to the Warhol Museum. So we went over there to check it out. On
Friday's after 5pm, it's half price.
In what Lee called the nicest wheelchair in town, we made our way through every floor.
Probably the most fabulous thing we saw, I mean experienced, was the silver balloon room.
( see Facebook for a photo )
I was beginning to lose steam so we checked out the Warhol cafe for a coffee and an Andy shaped cookie. Plus my feet were on fire! All the walking I'd done was catching up with me.
After spending a great deal of time and a good deal of money in the Warhol gift shop, we made our way to the Hofbrauhaus. A gigantic Bavarian restaurant and brewery. Should have been called Hofbraumansion. We dined on pretzels and potato cakes. And talked about what's next.
The transplant committee will meet at some point this coming week to discuss Lee's case. After a decision has been made, he'll get "the call." And that's when I'll let you all know.
Thursday, August 4, 2011
The separation of church and fate
Hallelujah! Only one appt. today. It was an endoscopy at Shadyside Hospital which is about a mile and a half from the hotel but part of UMPC. For those who have never had an endoscopy they suck. Literally.
We should have known it would take a long time. The doc was working on patients left and right. It took a good 3 1/2 hours or so from start to finish.
Dr Jobe, the GI specialist, was pretty cool. I wasn't present in the consult since they were readying Lee for the procedure but I did talk with him post procedure. And I felt good about what he told me. He said he found no surprises during the endoscopy. Not sure what sorts of surprises he expected though. And he performed a biopsy for Scleroderma while digging around in there. "Scleroderma is a connective tissue disease that involves changes in the skin, blood vessels, muscles, and internal organs. It is a type of autoimmune disorder, a condition that occurs when the immune system mistakenly attacks and destroys healthy body tissue." **
Doctors have long thought Lee has this disease but his tests always come back negative.
Dr Jobe thinks that since Lee is otherwise healthy besides the bad lungs and esophagus concern, he would be a good candidate for a transplant from a GI point of view. He also thinks Lee would recover well but would probably have to have that Fundoplication surgery I mentioned the other day. And Lee has age on his side. He's younger than most PF patients.
More reassuring words.
For dinner, we decided to try out a well known restaurant in town that's also a microbrewery in a 1903 church. Church Brew Works was quite an experience. Beautiful inside and out. And the food was tasty. Although I can safely say that I don't like fries on or in or even around my salad. People in Pittsburgh love fries in food. When we walked in I noticed the incredibly strong odor of what I have read to be wort emanating from the brewing vessels. For me, it was
down right stinky and at times overwhelming. But then again, I don't drink beer. Never have.
After dinner, I dropped him off at the hotel so I could pick up some pepto for him.
Endoscopies can often upset your tummy. Lee is now resting on the bed watching busty models in bikinis whale watching in Hawaii. Great.
And to end the evening for me, I just went for a warm soak in the hot tub followed by a short swim. Instead of taking it easy, I messed around trying to take goofy photos of myself. I really need the exercise though as this trip has totally screwed my diet. I had lost almost 6 pounds, wasn't eating sweets or many carbs but this week it's all gone to hell. Friggin'
stress.
Serenity now. Serenity now.
** http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001465/
We should have known it would take a long time. The doc was working on patients left and right. It took a good 3 1/2 hours or so from start to finish.
Dr Jobe, the GI specialist, was pretty cool. I wasn't present in the consult since they were readying Lee for the procedure but I did talk with him post procedure. And I felt good about what he told me. He said he found no surprises during the endoscopy. Not sure what sorts of surprises he expected though. And he performed a biopsy for Scleroderma while digging around in there. "Scleroderma is a connective tissue disease that involves changes in the skin, blood vessels, muscles, and internal organs. It is a type of autoimmune disorder, a condition that occurs when the immune system mistakenly attacks and destroys healthy body tissue." **
Doctors have long thought Lee has this disease but his tests always come back negative.
Dr Jobe thinks that since Lee is otherwise healthy besides the bad lungs and esophagus concern, he would be a good candidate for a transplant from a GI point of view. He also thinks Lee would recover well but would probably have to have that Fundoplication surgery I mentioned the other day. And Lee has age on his side. He's younger than most PF patients.
More reassuring words.
For dinner, we decided to try out a well known restaurant in town that's also a microbrewery in a 1903 church. Church Brew Works was quite an experience. Beautiful inside and out. And the food was tasty. Although I can safely say that I don't like fries on or in or even around my salad. People in Pittsburgh love fries in food. When we walked in I noticed the incredibly strong odor of what I have read to be wort emanating from the brewing vessels. For me, it was
down right stinky and at times overwhelming. But then again, I don't drink beer. Never have.
After dinner, I dropped him off at the hotel so I could pick up some pepto for him.
Endoscopies can often upset your tummy. Lee is now resting on the bed watching busty models in bikinis whale watching in Hawaii. Great.
And to end the evening for me, I just went for a warm soak in the hot tub followed by a short swim. Instead of taking it easy, I messed around trying to take goofy photos of myself. I really need the exercise though as this trip has totally screwed my diet. I had lost almost 6 pounds, wasn't eating sweets or many carbs but this week it's all gone to hell. Friggin'
stress.
Serenity now. Serenity now.
** http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001465/
Wednesday, August 3, 2011
Emotional Rescue
Ever have one of those days when little things go wrong from the get go? And then by the end of the day, you're ready to strangle someone? Yeah, me neither.
Our shuttle ride to the hospital was late this morning. Partly due to a driver misunderstanding and b/c several main streets were closed due to filming Batman. So obviously we were late to our first appt., which was the 6 minute walking test. Luckily, it was no big deal.
Our 2nd appt was with the head shrink. Excuse me, behavioral health. We liked this older lady. She enjoyed hearing about our pets. She's a cat lady like me so she was ok in my book.
Her job is to make sure Lee he doesn't have any emotional issues that might hinder his progress if he is chosen for a transplant.
Here is a list of criteria that are key for a successful transplant from an emotional standpoint:
1. Strong support system - we've got that
2. Intelligence - Lee certainly has it, still not sure about me.
3. Ability to laugh - I think we do alright in that dept.
4. Stubbornness - must be able to question if in doubt, know when to stick up for himself etc.
5. Spirituality - neither of us believe in God, we are not religious. But Lee's response to
her was that he believes there is a sense of mystery to life, that whatever exists is beyond our comprehension.
For good reason, Lee has been struggling with what to do if UPMC accepts him for a transplant. You might think, why wouldn't he want to get a transplant? Well, it's not that simple. It never is with decisions as huge as this one. The risks could be just too great for Lee. Without question Lee wants to get better, to feel better, to be able to walk Stella down the street, to hike in the mountains, to go swimming, to travel without it wearing him out and so many other things. But he has very real risks to contend with. The kind that could kill him. The kind that would make his quality of life...suck.
So Lee asked this question of her, did she think he should go for it. And she basically said yes. Her explanation of why she thought yes was perfect. Lee has two choices, either go ahead with the transplant given the opportunity or die. Why not try, why not take the risk. Lee needed to hear someone say something reassuring. Not stats, not percentages but an opinion. I think what she said really helped him out. But we still have 2 days left. And we have no idea what the committee will decide next week.
His last tests of the day were an X-ray, a CT scan and yes, more bloodwork.
We were thrilled to get back to the hotel. Enough crazy drivers and annoying tests to take, we'd both had it.
Unrelated to anything remotely medical, I went down to the Batman set for about an hour and a half late this afternoon. It was good for me to get some fresh air while stalking movie stars. I either saw Christian Bale or his stunt double in "the" suit. Was a too far away to know for sure. Took a few pics while the crew filmed scenes inside.
After I had my fill of standing around in the heat and waiting for the impending rain, I returned to the hotel. For the 2nd time this week, we dined at a Burmese restaurant. Good eatin'. I considered going for a relaxing swim and then hit the whirlpool but I'm just too dang tired. Plus I haven't shaved my legs.
Our shuttle ride to the hospital was late this morning. Partly due to a driver misunderstanding and b/c several main streets were closed due to filming Batman. So obviously we were late to our first appt., which was the 6 minute walking test. Luckily, it was no big deal.
Our 2nd appt was with the head shrink. Excuse me, behavioral health. We liked this older lady. She enjoyed hearing about our pets. She's a cat lady like me so she was ok in my book.
Her job is to make sure Lee he doesn't have any emotional issues that might hinder his progress if he is chosen for a transplant.
Here is a list of criteria that are key for a successful transplant from an emotional standpoint:
1. Strong support system - we've got that
2. Intelligence - Lee certainly has it, still not sure about me.
3. Ability to laugh - I think we do alright in that dept.
4. Stubbornness - must be able to question if in doubt, know when to stick up for himself etc.
5. Spirituality - neither of us believe in God, we are not religious. But Lee's response to
her was that he believes there is a sense of mystery to life, that whatever exists is beyond our comprehension.
For good reason, Lee has been struggling with what to do if UPMC accepts him for a transplant. You might think, why wouldn't he want to get a transplant? Well, it's not that simple. It never is with decisions as huge as this one. The risks could be just too great for Lee. Without question Lee wants to get better, to feel better, to be able to walk Stella down the street, to hike in the mountains, to go swimming, to travel without it wearing him out and so many other things. But he has very real risks to contend with. The kind that could kill him. The kind that would make his quality of life...suck.
So Lee asked this question of her, did she think he should go for it. And she basically said yes. Her explanation of why she thought yes was perfect. Lee has two choices, either go ahead with the transplant given the opportunity or die. Why not try, why not take the risk. Lee needed to hear someone say something reassuring. Not stats, not percentages but an opinion. I think what she said really helped him out. But we still have 2 days left. And we have no idea what the committee will decide next week.
His last tests of the day were an X-ray, a CT scan and yes, more bloodwork.
We were thrilled to get back to the hotel. Enough crazy drivers and annoying tests to take, we'd both had it.
Unrelated to anything remotely medical, I went down to the Batman set for about an hour and a half late this afternoon. It was good for me to get some fresh air while stalking movie stars. I either saw Christian Bale or his stunt double in "the" suit. Was a too far away to know for sure. Took a few pics while the crew filmed scenes inside.
After I had my fill of standing around in the heat and waiting for the impending rain, I returned to the hotel. For the 2nd time this week, we dined at a Burmese restaurant. Good eatin'. I considered going for a relaxing swim and then hit the whirlpool but I'm just too dang tired. Plus I haven't shaved my legs.
Tuesday, August 2, 2011
Weird Science
Another busy day.
Started off the day meeting with a 2nd transplant coordinator. Had to sign and fill out a shit load of documents.
Our consult with the financial analyst afterwards was disappointing. She only provided info regarding our insurance policy and what it covered. Helpful but I expected more.
Then the transplant surgeon came in. He was a pleasant Indian lad. Asked Lee all sorts of questions about his medical history and PF symptoms. Followed by a short physical inspection. Afterwards, he gave us a slew of information. Some stuff we'd heard before. You know, the basics about lung transplantation. Remember, this is our 3rd time going through this process.
Risks: dying, excessive bleeding, prolonged ventilator support, rejection and infection. For Lee there's the added risk of reflux. Can cause serious problems. Lee might also need to undergo a surgery called Fundoplication. It's a common route for patients with esophageal dismotility. Things to think about.
And the dreaded feeding tube issue. The surgeon seems to think it would only be temporary. But he's not an esophagus expert. He also believes Lee should be able to return to eating normally. Again, he's not the expert. We've heard that there is a portable version of the feeding tube. But I should stress that this issue is make it or break it for Lee. Luckily, we meet with the esophagus specialist on Thursday before Lee gets an endoscopy. After we talk with him and ask questions, we'll have a better idea of where Lee stands.
Here's a few stats:
> The first year after transplantation is the hardest.
> After 5 years, 50% of lung transplant patients are still living.
> There is an 80% chance that Lee could return to where he was physically 7 or 8 years ago.
> Transplantation doesn't necessarily make you live that much longer, but the quality of life is increased with a successful surgery.
I asked the surgeon if patients were ever allowed to watch a live lung transplant. No but he was able to pull up a video of the surgery, done here at UPMC. If you are interested, here's the link. I should warn you it's gross, made me feel weak, but quite interesting.
http://www.upmcphysicianresources.com/upmc/videos/how-i-do-it-recipient-surgery-minimally-
invasive-lung-transplantation
We didn't get back to the hotel till about 3:30. Took a HUGE nap. Then off to dinner. We had hoped, and still hope, we can do something fun while we are here. All work and no play makes Leslie a dull gal.
Started off the day meeting with a 2nd transplant coordinator. Had to sign and fill out a shit load of documents.
Our consult with the financial analyst afterwards was disappointing. She only provided info regarding our insurance policy and what it covered. Helpful but I expected more.
Then the transplant surgeon came in. He was a pleasant Indian lad. Asked Lee all sorts of questions about his medical history and PF symptoms. Followed by a short physical inspection. Afterwards, he gave us a slew of information. Some stuff we'd heard before. You know, the basics about lung transplantation. Remember, this is our 3rd time going through this process.
Risks: dying, excessive bleeding, prolonged ventilator support, rejection and infection. For Lee there's the added risk of reflux. Can cause serious problems. Lee might also need to undergo a surgery called Fundoplication. It's a common route for patients with esophageal dismotility. Things to think about.
And the dreaded feeding tube issue. The surgeon seems to think it would only be temporary. But he's not an esophagus expert. He also believes Lee should be able to return to eating normally. Again, he's not the expert. We've heard that there is a portable version of the feeding tube. But I should stress that this issue is make it or break it for Lee. Luckily, we meet with the esophagus specialist on Thursday before Lee gets an endoscopy. After we talk with him and ask questions, we'll have a better idea of where Lee stands.
Here's a few stats:
> The first year after transplantation is the hardest.
> After 5 years, 50% of lung transplant patients are still living.
> There is an 80% chance that Lee could return to where he was physically 7 or 8 years ago.
> Transplantation doesn't necessarily make you live that much longer, but the quality of life is increased with a successful surgery.
I asked the surgeon if patients were ever allowed to watch a live lung transplant. No but he was able to pull up a video of the surgery, done here at UPMC. If you are interested, here's the link. I should warn you it's gross, made me feel weak, but quite interesting.
http://www.upmcphysicianresources.com/upmc/videos/how-i-do-it-recipient-surgery-minimally-
invasive-lung-transplantation
We didn't get back to the hotel till about 3:30. Took a HUGE nap. Then off to dinner. We had hoped, and still hope, we can do something fun while we are here. All work and no play makes Leslie a dull gal.
Monday, August 1, 2011
Just another manic Monday
Today was a long day for us. Started off with getting up at 6:30. Ouch. Ended at 4pm. Ouch.
Our first appt was with the Transplant Pulmonologist. Wow, what a way to start off the evaluation week. This Dr. we liked, she didn't sugar coat anything. But shit, it was depressing.
We discussed his chances at getting transplanted here. Gave us examples of patients with medical histories similar to Lee. One with a good outcome and one with a bad outcome.
Here's the bottom line for Lee, with his esophagus problem, transplantation can be very dangerous. Could develop lots of infections and lung rejections. Plus there is the chance he would have a feeding tube for the rest of his life. Lee will just not accept that. One thing is for sure, he would be on a feeding tube for at least 6 months after the transplant.
This hospital, like many others, is about quality of life. For patients with PF like Lee, transplantation is a life saving procedure. But would his quality if life be good enough to chance such a surgery?
We left that meeting with a great deal to think about. And this is just day one.
Our 2nd appt was with the Social Worker. It's her job to get to know the patient and the primary caregiver. She suggested I get a back up caregiver in case I get sick or need to return home for any reason. My father has agreed to step in for me should the need arise. And it will. He has the financial means to travel to Pittsburgh, the availabilty and is tenacious enough to handle the situation. Thanks Dad.
Our Social Worker said this, "it takes a village to get a transplant." And she's not kidding. The transplant team, (which is about 15-20 people) the caregivers, our support system, and let's not forget the donor.
We also discussed the financial burden that transplantation causes. No figures were given, we
meet the finance/insurance person tomorrow. But Oh god. I can't tell you how much this part
hurts. We were told we would be here a minimum of 3 months. B/c of Lee's esophagus dismotility, it could be 6 months or longer. All follow up appts. would be here too. So we'd have bills here and at home. Ugh.
The last big appt we had was a 2 hour orientation. 18 other patients and their caregivers were
present. One cool thing we learned, that a new lung transplant surgery procedure is done at UPMC. They no longer open up the chest like a clam shell. Instead they make a small incision for removing the old and inserting the new lung. The lungs must first be deflated to do so.
And no ribs get broken. Now that's awesome.
The day ended with Lee giving many many vials of blood, to an actual nurse not a vampire.
We decided we deserved a fab asian dinner and then homemade ice cream, after what was an emotionally exhausting day.
Our first appt was with the Transplant Pulmonologist. Wow, what a way to start off the evaluation week. This Dr. we liked, she didn't sugar coat anything. But shit, it was depressing.
We discussed his chances at getting transplanted here. Gave us examples of patients with medical histories similar to Lee. One with a good outcome and one with a bad outcome.
Here's the bottom line for Lee, with his esophagus problem, transplantation can be very dangerous. Could develop lots of infections and lung rejections. Plus there is the chance he would have a feeding tube for the rest of his life. Lee will just not accept that. One thing is for sure, he would be on a feeding tube for at least 6 months after the transplant.
This hospital, like many others, is about quality of life. For patients with PF like Lee, transplantation is a life saving procedure. But would his quality if life be good enough to chance such a surgery?
We left that meeting with a great deal to think about. And this is just day one.
Our 2nd appt was with the Social Worker. It's her job to get to know the patient and the primary caregiver. She suggested I get a back up caregiver in case I get sick or need to return home for any reason. My father has agreed to step in for me should the need arise. And it will. He has the financial means to travel to Pittsburgh, the availabilty and is tenacious enough to handle the situation. Thanks Dad.
Our Social Worker said this, "it takes a village to get a transplant." And she's not kidding. The transplant team, (which is about 15-20 people) the caregivers, our support system, and let's not forget the donor.
We also discussed the financial burden that transplantation causes. No figures were given, we
meet the finance/insurance person tomorrow. But Oh god. I can't tell you how much this part
hurts. We were told we would be here a minimum of 3 months. B/c of Lee's esophagus dismotility, it could be 6 months or longer. All follow up appts. would be here too. So we'd have bills here and at home. Ugh.
The last big appt we had was a 2 hour orientation. 18 other patients and their caregivers were
present. One cool thing we learned, that a new lung transplant surgery procedure is done at UPMC. They no longer open up the chest like a clam shell. Instead they make a small incision for removing the old and inserting the new lung. The lungs must first be deflated to do so.
And no ribs get broken. Now that's awesome.
The day ended with Lee giving many many vials of blood, to an actual nurse not a vampire.
We decided we deserved a fab asian dinner and then homemade ice cream, after what was an emotionally exhausting day.
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